After Years Of Infertility And Pain

Hi everyone, I'm new here and undiagnosed. Gee, where do I start? I will try to summarize where I can to make for less reading.

I have been married for 10 years, 36 years old. I was engaged at 19 to someone else for two years and never used birth control, never pregnant. I have never used any birth control and have never been pregnant (past four weeks), but have had three chemical pregnancies with my husband.

At the age of 21 I was diagnosed with a minimal case of Endometriosis. No blockages, everything normal, but a very minimal case. Three years ago I had another surgery confirming again the presence of minimal Endometriosis. I have had 3 failed IVF cycles, in two cycles many eggs but only one embryo to replace, growth was arrested. Last cycle at 33 years old, no mature eggs, cycle canceled. Advised to use Donor Eggs.

From the age of 16 I developed allergies along with painful menstrual cycles. At the age of 19 I remember going to the Dr. complaining about pain in my knees as I walked up or down stairs. From the age of 21 I would sit behind my desk at work counting the minutes to go home to be able to release the built up gas in my belly, day after day, not knowing where this was coming from. Eventually I accepted that this was just a part of aging. I accepted IBS, or "need to strengthen my muscles around my joints". But as I continued to age and pile on the complaints, watching them dismissed one by one by doctors, I started to think I had an autoimmune problem and that all of these things happening to me were not just coincidence, aging, or normal aches and pains, but that they are all connected and related to a single autoimmune problem.

My complaints got much worse throughout the years and are as follows:
Allergies (cat, grass, trees, dust, idk... air
Endometriosis
Unexplained Infertility (even with Endo diagnosis, I stumped doctors because I had such a minimal case)
Joint pain & swelling
Extreme water retention (didn't matter how much water I drank or reduced salt, I swelled. Fingers and ankles as if I was 9 months preg or kidney failure)
Every day would be a surprise what kind of BM I would have. Runny: Check. Stopped up: Check. Normal: NEVER
Constant gas pains
Depression. This is situational as well, but I will explain later...
Sensitive pressure points: I thought myself that it was strange that it would hurt when my husband would jokingly poke me and I would bruise. This is strange. Certain points with the smallest bit of pressure were very painful.
Tingling in my fingers (especially when waking up after sleeping) and feet. Very strange tingling/ burning/ pins and needles. Very disturbing.
Wow, I could go on with this list as there is a lot more, but I won't. I've made my point.

Finally, after having enough and the Dr.'s not doing anything, I went on an angry hunt on the internet. I found one culprit for many of my complaints. A common factor: GLUTEN. So I removed it. I tried a 30 day gluten-free diet. WOW! EVERYTHING, and I mean EVERYTHING went away!!! Within 3 days the tingling stopped and I started having normal BM's. My energy came back (FINALLY!) Within a week, I had no aches or pains in my joints! I really couldn't believe the difference! I noticed so many changes I was convinced. My mood was normal again, no extra sleeping (DEPRESSION LIFTED!) Yes, I have had to deal with a lot of crap that would justify depression, okay, but the big heavy cloud was just gone. GONE. And my energy, normal ME was back!

After 30 days gluten-free, I played around with gluten to see what would happen. Lo and behold, I got joint pains and allergies back right away. Tingling came back, and actually all symptoms came back the more gluten I introduced. I also had symptoms leave the weeks or days I left gluten out. All in all, this experiment lasted three months. The most amazing thing I accomplished in the last month: Pregnancy. I miscarried at 4 1/2 weeks. Many women would say that was nothing. For me, a positive pregnancy test was everything. I also have a very non-bloody picture of "something" the size of a pomegranate seed, raw chicken/ flesh like, little tiny veins and a confirmation from a doctor that it indeed was an early miscarriage. Strange though that it seemed bigger than it should have at 4 1/2 weeks. So who knows how far along I really was.

I have had the Celiac blood screening test and it was negative. (not a shock as most gluten was already removed) I have an appointment for an immunologist to do further testing.

I am convinced, not that I am a Celiac, but that I do have a significant gluten sensitivity. I would like to know if after reading what I have provided if others might agree. My body says yes, but even my husband thinks it could be a placebo effect. Funny, that's what a lot of Doctors told me for years before they found the Endometriosis. (It's all in my head). HA!

Thanks for any comments. I only hope that "SOMEONE" out there may Google something and find this post and recognize something in it so that they can be saved years of wondering and maybe come closer to an answer for their problems.

I don't think you really need to ask us for an answer. I think you have found your own answer that all those doctors over all those years could not find. Yes, those are all symptoms of celiac disease/gluten intolerance, including most definitely infertility/inabilty to carry a child to maturity. Did your allergies go away too? You may find you are still allergic, but for my husband his allergies no longer turn into sinus infections.

Isn't it wonderful to rediscover yourself after all those years?

You might want to wait a little before trying to conceive again to give your body a chance to heal. Have your primary care physician check you out for vitamin and mineral deficiencies which are typical with gluten intolerance, and supplement whatever you are deficient in to ensure a healthy baby, particularly folic acid.. The primary deficiencies are often D, B12, iron/ferritin, magnesium, zinc and maybe even calcium. I believe all the miscarriages are due to your body recognizing that it could not give the baby what he needed to grow.

I wish you happy healing, and in the not-so-distant future a full-term pregnancy.

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Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

I don't think you really need to ask us for an answer. I think you have found your own answer that all those doctors over all those years could not find. Yes, those are all symptoms of celiac disease/gluten intolerance, including most definitely infertility/inabilty to carry a child to maturity. Did your allergies go away too? You may find you are still allergic, but for my husband his allergies no longer turn into sinus infections.

Isn't it wonderful to rediscover yourself after all those years?

You might want to wait a little before trying to conceive again to give your body a chance to heal. Have your primary care physician check you out for vitamin and mineral deficiencies which are typical with gluten intolerance, and supplement whatever you are deficient in to ensure a healthy baby, particularly folic acid.. The primary deficiencies are often D, B12, iron/ferritin, magnesium, zinc and maybe even calcium. I believe all the miscarriages are due to your body recognizing that it could not give the baby what he needed to grow.

I wish you happy healing, and in the not-so-distant future a full-term pregnancy.

Thank you so much Mushroom for your reply! It's just nice to hear that others don't think I'm nuts. The allergies did go away. I had full blown allergies when I removed the gluten, and then the allergies returned when I added it back in. They actually returned in a full-blown attack for two days while I was testing gluten re-introduction, and then stopped just as soon as I removed the gluten again. To be fair, "maybe" there was something coincidentally in bloom for those two days that I reintroduced the gluten??? I'll have to test this out during a full blown allergy season in the spring. :-) And yes, it's AWESOME to feel normal again! To FINALLY have an answer. I'm so thankful for people who speak up and for studies that have been done so that I could google certain things to find this link.

Just in brief - I had 2 early miscarriages before my 1st child and 6 before my second.

I have only just discovered I am celiac, and it explains so much.

My experience was that when I was eating well and doing what I could to reduce stress my body finally held the pregnancies.

I am really thinking of you, and hope that as your body heals you will find pregnancy possible.

There have been a couple of threads recently which are worth checking out.

Very good luck

I'm so sorry you had to suffer so many miscarriages. People don't really realize how much suffering there really is to it, do they? You never forget. Never. I was just telling my husband tonight that maybe it is a blessing that we never carried full term, or even further than the 4 1/2 weeks, if I have an undiagnosed case of Celiac. I have read that pregnancy in undiagnosed Celiacs is a cause of all kinds of birth defects. Not that I wouldn't love any child God blessed me with, but maybe suffering all these years from infertility have spared the heartache of a the challenges that may come with possible complications for a child. At least now we can make sure I am healthy and a baby will be given the best possible chances.

I don't do too many gluten-free products. Only 3 simple ones I can think of. For the rest, it's veggies, fruit, and bio-meat. Healthy.

I have read that pregnancy in undiagnosed Celiacs is a cause of all kinds of birth defects. Not that I wouldn't love any child God blessed me with, but maybe suffering all these years from infertility have spared the heartache of a the challenges that may come with possible complications for a child.

Welcome to the board. While doctors don't really know why we have trouble concieving and are more likely to miscarry I have never heard of undiagnosed celiac causing birth defects. It is however genetic so if you have gluten issues you should keep an eye out with your future children to make sure that if celiac is triggered in them you can get them on the diet.

I also had trouble with concieving. Didn't use birth control for over 10 years and was told I would never have children. Somehow even on gluten I managed to carry two children to term and they were healthy. They did however inherit the genes for celiac and were diagnosed after I was.

It sounds like you are doing well gluten free. Do get the vitamin and mineral panels done that were suggested and hopefully you will have a little one in your arms at some point down the road.Doctors are so clueless about celiac but you have figured it out and should have many healthier and happy years ahead of you.

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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45Blood tested and repeatedly negativeDiagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56Twin brother died as a result of autoimmune liver destruction at age 15

Heartfelt sympathy for your infertility and other suffering. I hope you will keep experiencing better health. Children are blessings. I had one known misscarriage, 5 successful births followed by 12 years of infertility and 2 adopted children

Welcome to the board. While doctors don't really know why we have trouble concieving and are more likely to miscarry I have never heard of undiagnosed celiac causing birth defects. It is however genetic so if you have gluten issues you should keep an eye out with your future children to make sure that if celiac is triggered in them you can get them on the diet.

I also had trouble with concieving. Didn't use birth control for over 10 years and was told I would never have children. Somehow even on gluten I managed to carry two children to term and they were healthy. They did however inherit the genes for celiac and were diagnosed after I was.

It sounds like you are doing well gluten free. Do get the vitamin and mineral panels done that were suggested and hopefully you will have a little one in your arms at some point down the road.Doctors are so clueless about celiac but you have figured it out and should have many healthier and happy years ahead of you.

Thank you ravenwg for sharing your experience with infertility/fertility and celiac. It is comforting for me to say the least. I will definitely have the immunologist check everything, as we are on the top of a list for an egg donor.

For information on birth defects relating to Celiac Mothers, I would say it is inconclusive, though something to ponder. Here are the a couple of sites I have found: http://www.healthcom.../symptoms.shtml

Heartfelt sympathy for your infertility and other suffering. I hope you will keep experiencing better health. Children are blessings. I had one known misscarriage, 5 successful births followed by 12 years of infertility and 2 adopted children

*****

YOU must be one amazing woman! It breaks my heart that people don't speak more freely about infertility. Women need to hear and know they are not alone. I have never had a child, but know that just because you have had one, or even five, it doesn't stop the sting of infertility any less. And just because you have had five and adopted two, the one that didn't make it is just as close to your heart as the others in one way or another. We looked into adoption and went through classes as well. I learned a lot listening to the voices of adoptees. For a lot of reasons, adoption was not the right path for us at that time. We have gone through a foster care program here in the Netherlands. It is wonderful to have been accepted and one day have the privilege to help a child and a family in need. I know that I first need to close this door though. We are hoping that through Egg Donation we will have two embryos to replace and have a successful pregnancy. Any embryos that are left over/ frozen, we want to donate to another couple. This is our hope. When we are ready, we would love to foster a child.

A benefit of having all of these "problems", searching and research, infertility etc... it sure helps you become aware of the world. It makes you more compassionate, understanding, and empathetic to everyone. That's the positive side of things.